As President of Alberta and NWT Division, MS Society of Canada, I am committed to providing Albertans with an update on our efforts to
accelerate research on CCSVI and advocate the views of persons with MS

in Alberta. I think we can all agree that Canadians living with MS

urgently require answers about the pros and cons of CCSVI treatment. It

is also a fact that the MS Society of Canada’s mandate is to end MS and

to assist those diagnosed with it today, though we may disagree about

the means and ways to achieve this goal. For those of you who may

question or doubt the commitment of the MS Society of Canada to end MS

and to represent persons with MS, I ask you to reflect on the fact that

members of MS Society national board, divisional boards and chapters

across the country, as well as many paid and volunteer staff, have MS

themselves or have a spouse, child, other family relation or friend with

MS. I can tell you from my own experience that there remains a wide

range of opinion and experience out there about CCSVI. As President of

the Alberta & NWT Division, MS Society of Canada, I have an

obligation to represent both those persons for and against CSSVI, and

those persons who are unsure about what it all means and what exactly

the next steps are.

Let me tell you about some of our most recent actions and successes to date.

On October 28, 2010, the Minister of Alberta Health & Wellness
convened an expert panel meeting to listen to and understand the views

of patients, the MS Society, Neurologists, MS Researchers,

Interventional Radiologists, Bioethicists and senior representatives

from Alberta Health & Wellness. On behalf of the MS Society’s

Alberta Division Board of Directors, the MS Society urged the Government

of Alberta to do its part in finding answers about CCSVI by announcing

its own support for accelerating CCSVI research or in collaboration with

Saskatchewan. Like Saskatchewan, Alberta is a place with an extremely

high incidence of MS. Albertans with MS, and their families, deserve our

efforts to find answers to this terrible disease. You may have heard

or seen recently that the Yukon Government has joined with Saskatchewan

in support of their clinical trials. I will provide further updates

about this recent development once we know more about it.

Working with the medical community, the Government of Alberta has a primary
role to help persons with MS find the answers they need and deserve.

The MS Society of Canada supports the development of patient registries

and observational studies with appropriate medical oversight, and the

Alberta Division recommended the establishment of a provincial MS

registry and observational study in Alberta to track the outcomes of

patients who received the CCSVI treatment. The personal stories of

patients who have received the treatment are an important part of the

overall research picture and need to be recognized in order to help

shape future direction in CCSVI research and eventual treatment. We

recommended the registry and observational study be done in combination

with close clinical monitoring by the patient’s neurologist or

physician. These steps will help ensure patient safety, especially

concerning follow-up care for those who have received the treatment, and

increase our understanding of the benefits of this treatment as

reported by patients and medical personnel.

Furthermore, the government should support clinical trials in Alberta if the evidence
supports the safety and efficacy of the experimental treatment which is

best determined by the medical experts. There is considerable consensus

that the 7 CCSVI research projects funded by the Canadian and US MS

Societies will contribute significantly to our understanding of the

condition and its association to Multiple Sclerosis.

Since making this presentation to the Minister, which included patient
testimonials from Society members who received the treatment, we are

united in our concern that people need to receive the appropriate

aftercare should complications arise when they return from

out-of-country treatment. This is the position of the MS Society of

Canada, as was recently demonstrated by the MS Society in the Province

of Quebec.

Many of you have been extremely vocal in lobbying for access to this treatment, including rallying at the
Legislature and being introduced into the Legislature by various MLAs. I

assure you we have been working hard to advocate on behalf of Albertans

for answers regarding CCSVI. Together, I think we have raised the

awareness of MS to the point where we can expect action to be taken and

taken now.

I believe the Minister will do the right thing and take the appropriate action. The Hon Gene Zwozdesky has already
taken the positive step of establishing the MS Connector Services

Committee, which has the mandate to explore a Provincial MS Strategy to

improve the delivery of care & support services. Regardless of the

treatment one gets, MS is still with a person and we need to ensure care

and services are affordable, accessible and timely.

I want to sign off, for now, by remembering that we are a community –
there can be no “us” or “them” because the MS Society is part of the

community of persons with MS. People in a community have different

opinions, concerns and solutions. Determining the answers to the

questions posed by CCSVI, and any other research for that matter, is a

task that cannot be achieved if we don’t work together and respect each

other. I don’t have the answers to this terrible disease, but I hope

that you are seeing the evidence of our genuine efforts to find those

answers.

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